A Logo consisting of the letters AGD surrounded by stars and bows

Amazing Grace Davenport

Welcome to Our Story

Our daughter was born on . We quickly found out that grace had some health concerns, such as a hole in her heart and mottled skin. These symptoms were picked up after three days of being in the Neonatal Intensive Care Unit (NICU). But the doctors didn’t know why. After a week of hospital care, we got to bring Grace home, which was great news.

Our Early Months

Grace spent the first three months feeding and sleeping, with one hour of bottle feeding followed by one hour of sleeping. This routine went on day and night for the first three months as she didn’t take in large volumes, which was a concern for us since she wasn’t meeting her milestones for weight or development.

We spent the next 12 to 18 months attending many medical appointments and seeing a very helpful heart specialist. He suggested that Grace's genetics should be checked, so all of us—Mum, Dad, and Grace—had to be tested.

Sharing Our Story

We would like to share our story of Amazing Grace Davenport so people who might be in our situation one day know where to look and ask for help, and also to follow Grace on her journey.

Unexpected News

The syndrome started with Grace and wasn’t found in either of us, her mum and dad, so this is de novo. The genetics team explained a lot, such as her delayed development, issues with noise and lights, eating disorders like dysphasia, aspiration, seizures, heart issues, long QT, and mottled skin. These are just a few of the issues associated with NAA10.

After nine months, we got unexpected news: Grace has a problem on the X gene called NAA10, also known as Ogden Syndrome. This condition is so rare that Grace is one in 11 million, with about 200 known cases worldwide today. This rarity has earned her the name Amazing Grace Davenport.